Ellen's story



This testimony was written by Ellen to accompany Millie Brierley's exhibition 'Care at the Leading Edge', 1999 and updated in 2012 for this online exhibition. Her story is personal and not necessarily reflective of the experiences of other patients who took the drug. It is not the type of evidence which formed the basis on which Campath was approved for treatment.

I was asked recently if I’d write a little something on my journey with Behcet's disease and Campath. Where do you begin? You see my heads a little pickled, I can’t remember all the fancy names given to the procedures and treatments I’ve had. Only one word sticks in my head: Campath, so meaningless to the layman, but it means so much to me. Campath became my life, invaded my life to save me. At the time I don’t think I fully understood what was happening. The initial treatment was so rushed due to my condition, I’m not sure I was even on this planet, so many drugs and pain killers - I was floating.

Behcet’s disease has been a part of my life for a long time, but without medical knowledge it was overlooked countless times. Around the age of seven I became an outpatient at the haematology department at Northampton General Hospital (NGH) for nearly two years. I had an unusually low count of white blood cells, which doctors could not explain. Around the time my periods began my count of white cells returned to normal. Starting my periods was thought to have restored the matter and no more appointments were made.

I have always had animals around me from an early age and always seemed to be attacked by cat fleas. Every summer my legs would be in a terrible state. I would itch at the fleabites, which would eventually turn into scabs. I had the terrible habit of picking them and have many scars down my legs. I have now learnt that they are called phlebitis, and are not caused by fleas at all. Instead they are the inflammation of the vein which irritates the same way a fleabite would.

In 1998, around the anniversary of the death of Princess Diana, when I was 19 years old, my illness started to intensify. At the time I had a simple job working at McDonald’s a few miles down the road from home. The job wasn’t that important to me at that time but the social life and friendships I had with the young work force was. We worked and played hard, long hours followed by late nights clubbing and partying. Based on this, it was assumed that I was burning the candle at both ends when I fainted twice waiting for the bus (the second time being taken to hospital with nasty facial damage). Subsequent tests ruled out epilepsy.

Soon after my fainting episodes, I had a prolonged case of pleurisy which cut short my first holiday with friends. Many friends and family commented I did not look well, along with the hours I would spend asleep when not working or out. I was drinking huge quantities of fluids mostly squash dilutes, although I did not see much of a problem with it at the time. In the end I would not go anywhere without a empted squash bottle (1ltr +) refilled with dilute. It was thought I was going to drown myself. Diabetes was tested for several times, but never diagnosed.

For weeks I went back and forth to my GPs with a range of problems. A number of times I asked for my right ear to be examined, but the doctor couldn't find anything wrong, so I put it down to some water trapped inside my ear. I was always vomiting and being sent home from work as my job involved food. A number of times I thought I may be pregnant which put quite a strain on my partner and family. I also suffered an outbreak of vaginal boils. I had experienced such boils before, but these were unusually big so I had them checked out with a doctor.

One Saturday morning, in October 1998, I woke with a pounding headache. My head felt as though it was on fire and the pain was so intense all I could do was scream and sob. The doctor was called, who prescribed antibiotics for a sinus infection and some strong pain relief. Sunday another doctor was called as I was vomiting so much and my headache had not subsided. The doctor gave me more pain-killers. On the Monday I returned to the doctor's surgery. I had no energy and felt very lethargic. My right ear was causing me a lot of pain. My blood test suggested things were not right, but were inconclusive, so my general practitioner (GP) decided to admit me to the medical admissions unit at NGH. A CT scan showed me to have a large infection behind the right ear, Otis media, which was spreading into my inner ear. I was given yet another course of antibiotics, this time intravenously, and discharged five days later. Out of hospital for a week, I experienced no improvement so my GP sent me back to hospital where I was given intravenous fluids because I was very dehydrated. The ENT consultant came to see me and moved me to his ward at the other end of the hospital where I had a grommet fitted and it was assumed this would be the end of the problem.

I was discharged, but still in pain. I spent the following week at home driving my poor family to their wits end. Unable to get upstairs, I camped out on the sofa with my dad and my faithful German shepherd never leaving my side. I could never seem to quench my thirst and I seemed to be continually vomiting any my pain never stopped. The floor tiles in the kitchen literally burnt my feet. I couldn’t wear anything on my feet and couldn’t stand the pain of those floor tiles - hot rocks. My poor mother begged my GP for some answers and for him to do something.

I was readmitted to the ENT department only to be discharged. My sister took me back, complaining I still wasn’t right and I wasn’t leaving hospital until I was right. The night nurse came to the conclusion that I was stressed. We were surprised given I was 19 years old and had nothing to be stressed about, but reluctantly agreed so I was discharged to my GP to prescribe a cocktail of anti-depressants. I will never take anti-depressants again, the nightmares and hallucinations were so intense, even today the thought of them makes me gasp.

Things got no better. I would struggle getting to the toilet by myself. On a number of occasions I remember my sister half carrying me. It was very frightening thinking I was losing the ability to walk unaided and looking back it may have looked like I was suffering from ME. A follow-up appointment at the ENT department left the staff bewildered, why was this young lady not in hospital. I was truly a sight, I could barely walk without help, painfully thin and pale, almost ghost looking. The pain through my body was so intense and constant. My shoulders felt like ten rugby players sitting on them. I also had a sore throat, sore nose with ulcers, and lesions all over my body like the ‘fleabites’ I had as a child. My legs ached like I’d run the marathon. My head felt like it was caving in, with a constant numbness type of headache which would spike without warning and explode. At one point I convinced myself that an alien was on the loose in my body.

My history said it all: painful vaginal ulcers, sickness, headaches, ear infections, phlebitis and growing pains as a child. But of course all these were separate bouts of illness nothing to link them together as one. My GP never gave up, always knowing there was something more to this picture. Never having coming across such illness before, however, he didn’t have the answers. Nonetheless, he knew my blood results weren’t right so he continued to pursue blood tests, x-rays and make referrals. My last referral was for internal ultra sound at (NGH). This I attended with my dad, after vomiting in the car park before entering the clinic. The consultant asked me to undress and lie on the couch. Before the consultant had even finished his examination, my poor dad found himself racing me through the hospital to the ECG department. Dr Berry had taken one look at my hands and observed that at least three fingers on both hands had gone black at the tips. I had never noticed this before. I had felt pain in my fingers, but then I had pain everywhere from my head to little toe. Dr berry was very concerned I might have damage to the main arteries around my heart so cancelled the ultra sound and, in the absence of the arrival or a porter, had my father take me to the ECG department.

After that I was readmitted to hospital, this time for good. I was seen by a junior doctor who thankfully kick-started my road to recovery. She suggested Wegener’s Granulomatosis. I remember that first night quite clearly, surrounded by my family while I was given a high dose of steroids - prednisone. I was bouncing. For the first time in weeks, I walked to the toilet, nearly ran. The relief my family felt was enormous. I wasn’t yet out the woods, but at least now I had a illness to treat. I also thought I would be back on my feet within a matter of weeks.

I stayed in NGH for around three weeks before the blow came. The staff had tried all kinds of treatments, but I didn’t respond to anything. As a last resort they proposed a drug that carried a risk of making me infertile. Their suggestion was devastating. If I couldn’t have a family one day I felt there was really no point to life. Understanding my distress the doctor went off to make more enquiries. Returning a little later her news was grim. It would take two months to harvest my eggs to freeze them for future use. I didn’t have that long. In the meantime, however, my consultant had found a specialist in Cambridge doing research into a new drug to treat vasculitis diseases.

I transferred that night to Addenbrooke's, in early December 1998, along with my trusty intravenous machine which followed me on my numerous trips to the toilet; my thirst never letting up. I called myself 'terminator', always hooked up to the IV machine. By the time the ambulance was ready to take me that night, I ran down its battery so low, something they found out 20 minutes into the journey, a poor nurse had to intravenously syringe me manually all the way to Cambridge. How he did this, with me taunting him that he was going to overdose me, I do not know. I was still floating on steroids and my other medications.

Once at Addenbrooke's, Cambridge, we met Dr Lockwood, a wonderful man who understand me and the pain I had suffered. He knew the risks, knew the disease, knew the confusion of my head. He sat my family down and patiently explained everything. Only now did they know the full extent of my disease and discovered it was probably Behcet's disease rather than Wegener’s Granulomatosis. My brain involvement posed more worry to Dr Lockwood than it had to my Northampton consultant. He was particularly concerned that the damage I had suffered was irreversible. He made my family aware of the hidden damage throughout my body. All the visible lesions and ulcers on my body were a manifestation of all the damage I had suffered inside.

Dr Lockwood explained that he was running a trial and that in order to get me on the programme and stand any chance of reversing the damage the disease had already done, he would need to run some tests quickly to diagnose me. The drug wasn’t yet licensed and little was yet known about its side effects or success rate, but he believed it was my only option. I and my family gave our consent for me to go forward for the trial based on the fact that we trusted what Dr Lockwood was telling us and that my options and time were running out. He started the tests; blood, MRI, CAT, X-ray and biopsies. The first test was the mouth biopsy. My mother came that night to see me, with a funny wad of cotton wool in my mouth, the kind you have after having a tooth extraction. I told her I’d had an autopsy. My poor mother didn’t know whether to laugh or cry. After a few days in Addenbrooke's I was then transferred to Papworth Hospital to have a lung biopsy. It was a lovely hospital with staff to match. I was rushed back afterwards way too soon. Back at Addenbrooke's my lung collapsed, keeping me on a high dependency ward for quite a period. I vaguely remember that time from the ballerina dances I performed in order to get all the IV and oxygen tubes round my body to get on to the commode.

Once the tests were complete, I was ready to start the treatment with Campath. With parents at my side, I vividly remember the lovely, funny nurse fitting an intravenous drip containing CD-52 (Campath), warning me not to give her any 'funny business' as she wanted to get off on time that night. I, however, was to make her late! She was still in the bay doing the meds round when the world around me disappeared. My parents were immediately ushered out and the resuscitation trolley and oxygen brought in. My poor parents, as if they hadn’t been through enough. And what did I do when I finally came back …………….laughed through the ECG, so they couldn’t get a reading! That nurse knew to watch for it and knowing me, she guessed I’d have a good reaction to that strange medicine. Each and every dose threw my pains back at me ten fold. Still unable to lie down after my lung had collapsed, intravenous morphine was ordered by the attentive Dr Lockwood. It was as though Campath was going through my body undoing all the bad the disease had done, but in order to do that, I needed to have pain and patience for it to do its job. Slowly, I could feel the cotton wool unwinding around my head and the world becoming a bit clearer.

Soon after I was allowed home for the Christmas period. In hindsight I shouldn’t have gone, the journey home was terrible. My last dose of Campath before leaving had affected my lungs. My chest was exploding all the way home. My dad didn’t know whether to turn back, carry on or call for an ambulance to collect me from the supermarket car park where we temporarily stopped while I screamed in pain. I cried in pain for 64 miles, but begged my father to take me home. I hadn’t been home for two months and was desperate for the reprieve. I enjoyed the time home, but my poor family was so worried throughout, trying hard to make me comfortable, too hard at times, fussing. I so desperately wanted to sleep, rest, relax away from the bustle of the wards. Hospital is the last place to rest, nothing stops, not even at night. My diabetes insipidus still hadn’t been diagnosed, so my parents borrowed a commode, which my poor dad emptied so many times at night.

Boxing day I returned to Addenbrooke's to continue the Campath treatment. By this time I only needed a few more infused doses. Campath is a process. The first initial dose is the worst and as you go through the treatment each infusion gets easier to withstand. By this time I think I had also given up trying to fight the pains; I was so tired. Dr Lockwood could still not work out what was wrong with my thirst. Initially, when in hospital in Northampton we had been told that I was just flushing out infection. However, given that I still heavily drinking (mostly coca cola and anything fizzy) and equally peeing, the problem needed addressing. I kept a chart of input and output which was about even. I was eventually diagnosed with diabetes insipidus, that first course of medicine that night was a miracle for me, I slept like a baby all night, the relief was amazing.

I’d missed getting home for Christmas on full discharge and now was determined I’d be home for my birthday on 20 January. In the end I made it a couple of days before my 20th birthday. I was still quite poorly. I still had huge lesions on my legs and had contracted MRSA, but I’d finished treatment so home was now the best place for me to be. Dr Lockwood sat my family down to explain the guidelines on medication and emphasised that under no circumstances was I to have any stress or upset along. Our family had never been heavily medicated, but here was I with this carrier bag of meds, all of us bewildered by the quantises and what times I should have them. We were told of course, but the shock and realisation that this was now my life was hard for us al to grasp.

Life in hospital had taken its toll. I had spent very little time with people my own age and after weeks of living in a hospital ward it was daunting leaving what was almost a 'military' environment. Meal times are set and drugs are brought to you. You would think life in hospital would be relaxing and stress-free, with people looking after you and a bell at your bedside for whenever you need help. But you are never at peace, there is always something to do or something happening. Sleeping was a big problem for me. I was constantly tired because things didn't stop at night. Coming home was strange and I was quite frightened at the thought of not having the kind of security around me that I had become accustomed to over the two months that I had spent lying in a hospital bed. I remember thinking: what do I do if need something in the night or I'm ill, I haven't got a bell by my bedside!

So there I was back at home ready to resume life, but life was never going to be picked up from before. I now had a different life, full of what ifs and buts. By this time I was also under care of an endocrinologist at Cambridge because my adrenal gland didn’t seem to be recovering from the disease and my pituitary gland was half gone. Further down the line, I developed Graves' disease so had to have my thyroid fully removed. Campath may have contributed to the damage of my thyroid. My calcium levels never recovered after the removal of my thyroid in 2009. My thyroid was so diseased I also had to have my parathyroid (responsible for calcium levels in the body) removed.

My illness meant that I both gained and lost some things. I lost a carefree life, where not a lot mattered; life looked after itself. For example, I never had to worry about taking pills at a certain time. I was very tired before diagnosis and not a lot seemed to have changed after. After leaving hospital I had to gain a lot of strength, I couldn't believe how weak I was. I would get very frustrated not being able to feed or clean my animals. The most important advantage I gained was quitting smoking. If I hadn't been admitted to hospital I don’t think I would have been able to give up myself. I have also since treatment been able to have two beautiful children, now aged seven and four years old.

Campath was a hard drug to take and caused me painful complications. I liken the pain to what must be similar to having chemotherapy. But the clear head at the end of the treatment was worth the discomfort. What happens to your brain in Behcet's disease is so hard to describe. It really does feel like cotton wool wound around your brain making every thought and memory distant, realisation a fairy tale, and day to day life a struggle. My computer scratch pad is full of reminders and notes on mostly what my two beautiful children are doing next at school and socially. They have the social events and I have the hospital appointments, but I’m fine with that, they are healthy, bouncing and happy.

Since initial treatment, I’ve had another course of Campath just as difficult as the first. The course had me being rushed into NGH several times with either Campath or Behcet's complications. NGH staff are still clueless about what to do with me when I get there. I’ve had many doses of infliximab, the last dose was stopped and oxygen and adrenaline given instead! I still have Herima stocked in the fridge, unable to take it due to recurrent ear infections I was getting whilst on it. Previously, cyclosporine made up a huge part of my life until that was doing too much damage. I have also taken azathoprine and recently colchicine.

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It seems corny, but without firstly being seen by maybe the only doctor in NGH to recognize Behcet's, and without Dr. Lockwood's treatment, I would not be alive today. I owe a great deal to all those people who treated me and I am very grateful to them. Behcet's and Wegener's definitely need to be brought to the attention of the medical profession and the general public. I was one of the lucky ones. I find it difficult trying to explain my disease to people – if I had cancer people would immediately understand and recognize the illness, perhaps through the visual sign of hair loss following treatment. If I had broken my leg people would recognize the crutches and plaster. There are no visual characteristics to my illness - through ignorance and lack of publicity people just do not understand. I hope for the sake of people like me that a higher awareness is achieved through this exhibition.

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